Hepatitis B & C

Global context

The World Health Organisation endorses only four awareness days for health conditions – hepatitis is one of them, held annually on 28th July. The other three are TB, malaria, and AIDS.

This illustrates the level to which it is of global concern – 500 million people worldwide are infected with hepatitis B or C (or both).[1] The viruses affect the liver – ‘hepar’ means liver in Ancient Greek. Both can be fatal if left untreated, leading to liver cancer and cirrhosis. 57% of liver cirrhosis worldwide and 78% of primary liver cancer is caused by hepatitis B or C.[2]

It is known as the ‘silent epidemic’, as both viruses can be asymptomatic for decades, and only present when it can be too late for treatment. Globally, 1.5 million people die annually from hepatitis B or C;[3] this is more than twice the annual death rate from malaria.[4]

It is estimated that 1 in 3 people have been exposed to either or both viruses at some point in their lives.[5] Not all people who have been exposed to the virus will contract it; some people will contract and develop an acute infection, which usually lasts a few months, and can be cleared by the body’s immune system or through treatment. Rates differ for hepatitis B and C - about 20% of hepatitis C infections will clear naturally,[6] while for hepatitis B it depends much more on age. Only 5% of children who contract the infection clear naturally, whereas about 95% of adults who contract the infection clear it as the immune system is much more developed.[7] Some people go on to develop chronic infection of hepatitis B or C, where the virus lives in the body and causes damage over a number of years. This can then lead to other life-threatening diseases such as liver cancer and cirrhosis.

In Europe, hepatitis B or C affects 1 in 50 people.[8] Low levels of awareness and education are hindering testing and treatment for both viruses, which can be preventable and treatable. This is contributing to a vast global disease burden of hepatitis-associated diseases, which are usually end-stage and chronic, where drain on resources is very high and quality of life for patients is very low. Early diagnosis can combat this.

UK context

215,000 people in the UK are thought to be infected with chronic hepatitis C,[9] and 180,000 with chronic hepatitis B.[10] Every pregnant woman in the UK is now screened for hepatitis B.

Department of Health and NHS campaigns regarding both hepatitis B and C have focused on the White British population, and the common ways the viruses are contracted within this group – primarily, intravenous drug users, and men who have sex with men. The association with drugs, sex and alcohol means that the illnesses are stigmatised and very rarely talked about in other communities.

However, there is variation in common ways to contract the viruses across different groups of people. As both viruses are transmitted through blood-to-blood contact or through bodily fluids, there are various ways they can be contracted.

Current resources, government campaigns and levels of practitioner knowledge do not reflect this variation, and therefore alienate and do not necessarily support other groups or communities.

Minority communities

Surprisingly for the severity and extent of the viruses, very little peer-reviewed research has been conducted on rates of hepatitis B and C amongst specific populations in the UK and worldwide; however, several studies[11] show that in East London, 5% of Pakistan-born people are infected; almost 4% of Somalia-born people are infected, and 2% of people born in Bangladesh are infected.

“These data [testing 4998 people of South Asian origin] indicate that nearly one in twenty people born in Pakistan and living in England has chronic viral hepatitis.”[12]

There is particular concern for the prevalence of infection amongst minority communities, as rates of testing are quite low, which suggests many are living with infection and are undiagnosed. This then could lead to unintentional transmissions to others, particularly as knowledge levels are so low regarding this, as well as prevention and better management.

Common methods of transmission

The most common way to contract hepatitis B amongst the Pakistani community in the UK is through mother to child transmission (MTCT), where the mother already has hepatitis B and passes it to her child while giving birth. For hepatitis C it is through poor medical practices, most often back in the home country, and includes re-use of needles for injections, vaccinations and other blood-related medical procedures such as transfusions. Re-using razors for shving and haircutting is also a risk factor for transmitting hepatitis C. For the Muslim community, particular care must be taken around the head-shaving ceremony for babies (traditionally undertaken seven days after birth), circumcision, and preparation for Hajj and Umrah in terms of removal of body hair.

Specific issues relevant to the UK Pakistani population

Asymptomatic – Some people do experience symptoms of hepatitis B or C, which are similar for both viruses and include a general feeling of being rundown (easily mistaken by GPs), feeling depressed, a yellowing to the skin which indicates jaundice, fatigue, nausea, possibly poor concentration and aches and pains. Many people report a sense of feeling ‘not right’ without being able to pinpoint anything in particular. However, hepatitis B or C are often not accompanied by symptoms of illness. People may have been infected with the virus many years earlier, while receiving medical treatment or a haricut as a child in Pakistan.

Language – The Pakistani community refer to hepatitis B as jirkaan (yellow = jaundice) and hepatitis C as kalajirkaan (black jaundice). Jaundice however is a separate illness and can indeed be developed by those who have hepatitis B or C (though not all patients who have jaundice have hepatitis B or C).

Lack of GP knowledge with regards to hepatitis B and C transmission, and who is at risk – There remains a need to increase GP knowledge with regard to the increased risk of hepatitis B and C amongst different groups, and the differences - context - for this. This lack of knowledge is contributing to low levels of testing. From research focus groups and key informant interviews conducted as part of this project, it is clear that patients are being told on a regular basis that they are not at risk of hepatitis B or C, and being refused tests. Years of campaigns focused on intravenous drug has contributed to a narrowing of knowledge with regard to who else may be at risk, and why.

Association with drugs, sex and alcohol creates stigma – The national campaigns that focus on drugs and unprotected sex have also unwittingly created stigma around both hepatitis B and C, despite the other ways in which it can be transferred. Amongst Muslim communities, the knowledge that does exist links both to extramarital sex, HIV/STIs, injecting drugs, and also drinking alcohol (generally people link liver to alcohol). All are associated with 'bad behaviour' and/or mistakes, meaning the illnesses can be hushed up and not talked about. This contributes to a lack of support for those who have the illness, and massive stigma towards them as people fear catching it.

Low knowledge around transmission methods - The research groups showed that many people were unsure about how hepatitis B and C are passed on, with some thinking that the viruses could be passed on casually, that is, through e.g. touching, toilet seats, bad polluted air, contaminated food. This is not the case – both hepatitis B and C are transmitted through blood-to-blood contact, and hepatitis B can also be sexually transmitted.

‘Hep C is more serious than hep B’ - Hepatitis C is seen as more severe than hepatitis B, or as a more severe form of hepatitis B. They are in fact different illnesses; one is not a more severe form of the other. They both affect the liver and have similar symptoms, but causes and methods of transmission. Another misperception is that hepatitis A can develop into hepatitis B, and this can then develop into hepatitis C.

Barriers to testing – The research groups showed that people often took years to go and be tested, for many reasons – fearing not being able to look after family if they have the illness, not being able to find the time to be tested, too many hoops to jump through, poor communication with doctors or doctors being seen as being dismissive, treatment will make things worse, not wanting to be a social outcast, not wanting to be associated with the illness (occasionally it was seen as potentially damaging to marriage prospects), etc.

Urban/rural – Main populations at risk tend to be from urban areas, where there are more opportunities for transmission. This in part explains the lower rates of hepatitis B and C amongst the UK Bangladeshi population, as the vast majority originate in the rural region of Sylhet. The Pakistani population on the other hand originate from a broader range of urban areas.

Age – First generation immigrants, who spent their childhood and early life in their home country before travelling to Britain, may well have at some point been exposed to the virus. British Pakistanis, Somalis and Bangladeshis, if they regularly travel back to their home country or even a one-off trip, could also potentially be at risk. As Census data show that up to 80% of the immigrant population in East London are under the age of 50, and that liver cirrhosis and cancer rarely present in people under 50, it is likely that the next few years will see a dramatic increase in the proportion of people presenting with end-stage liver disease due to chronic viral hepatitis.

Action: for patients

Testing for hepatitis B or C is very simple – this is usually done by:

Blood test. This requires a small amount of blood being taken, either through a finger-prick test or more usually an injection in the arm, which is sent away for analysis. GPs and practice nurses can perform this test.

Saliva swab, for hepatitis C only. The infection itself is NOT present in saliva, but can indicate if the virus has ever been present in the body. A blood test will confirm this.

“Think about your visits home – if you ever visited the barber, or if you had to seek medical treatment and had to have an injection for anything. This might be a long time ago – 5 years, 10 years, 20 years, 30 years. If any of these things happened, get tested. If someone close to you or in your family has ever had hep B or C, get tested.”

Prevention

For hepatitis B, there is a vaccine which is approved by the WHO. Regular screenings for hepatitis B in the UK take place during antenatal checks, and babies who are at risk receive the vaccine within 24 hours after birth. People can receive the vaccination at any age.

As hepatitis B can also be transmitted during sex, using barrier methods of contraception such as condoms should prevent this (particularly if you don’t know if the other person has the virus or not. The only way to know is a test. See Action for patients, above).

Although there is no vaccine for hepatitis C, there are many ways in which transmission can be reduced or stopped.

Improved medical practices – using sterile and/or new equipment, including razors for shaving, haircutting; needles for injections and other blood-related medical procedures such as transfusions; body piercing equipment such as ear or nose piercing etc. Making sure that equipment is completely sterile and not been re-used is also important for circumcision and shaving babies’ heads in Muslim communities

Other preventative measures for both hepatitis B and C include:

Not sharing toothbrushes (in case of blood to blood transfer)

Never sharing needles or any equipment for injections (this includes anything medical, for tattoos or piercings, or drugs)

Treatment

For hepatitis B, less severe cases usually clear the body within a few months, but this depends on the age of the person when the infection was contracted. Infection as a child is more serious than infection as an adult. More severe and chronic cases may involve antiviral medication and other things such as maintaining a good nutritional balance, but there is no specific treatment - it depends on the context of the individual.

For hepatitis C, there are a variety of treatments but currently the most common is antiviral medication. Courses of treatment vary depending on the genotype of the virus, severity of the virus (what stage it’s at), the individual, and what their priorities are in terms of dealing with the illness. It is possible to clear hepatitis C for good - be cured of it.

Please note: all content on this page focuses on primarily the UK Pakistani community and is based on current available information. Methods of transmission and advice may vary for other groups.

G Uddin et al (2009) ‘Prevalence of chronic viral hepatitis in people of south Asian ethnicity living in England: the prevalence cannot necessarily be predicted from the prevalence in the country of origin’ Journal of Viral Hepatitis, doi:10.1111/j.1365-2893.2009.01240.x

The project is also supported by:

Based in London, the Trust was established in 1999 as a national charity dedicated to hepatitis C. They provide a wealth of excellent information on all aspects of hepatitis C, including the production of research and reports on a regular basis. They also have a confidential helpline and provide support to people with hepatitis C and their families.

Our latest health resource at understandhepbandc.org aims to increase awareness and understanding of hepatitis B and C amongst the Pakistani community in East London, and is suitable for both community members and GPs/medical practitioners.

We worked in partnership with Barts Charity, Professor Graham Foster at Barts & The London School of Medicine and Dentistry, the Hepatitis C Trust and Pakistani communities to produce a website and short films in English and Urdu which combine medical and cultural guidance. A poster and DVD containing the films is available to order via the project website: understandhepbandc.org/for-doctors.html

Why?

Low levels of knowledge amongst both community members and GPs about hepatitis B and C and the increased risk for people who have moved to the UK, are causing cases to go untested. Both hepatitis B and C are viruses which affect the liver; in the UK, 215,000 people are thought to be infected with chronic hepatitis C,[1] and 180,000 with chronic hepatitis B. [2]

Through jointly working with patients, imams and scholars, GPs, academics, community organisations and businesses, we are creating short films in English and Urdu to encourage early diagnosis in a primary care context. Both can lead to liver cancer and cirrhosis, with possible fatal outcomes. Chronic viral hepatitis B and C is known as the ‘silent epidemic’, as both viruses can be asymptomatic for decades, and only present once it is too late for treatment.

The primary methods of transmission for hepatitis B amongst the Pakistani and Bangladeshi communities are mother to child transmission (MTCT) at birth; for hepatitis C it is through poor medical practices, most often back in the home country, and includes re-use of needles for injections, vaccinations and other blood-related medical procedures such as transfusions. Re-using razors for shving and haircutting is also a risk factor for transmitting hepatitis C. For the Muslim community, particular care must be taken around the head-shaving ceremony for babies, circumcision, and preparation for Hajj and Umrah.

Find out more about the 'silent epidemic' and why it's important to get tested

Global context

The World Health Organisation endorses only four awareness days for health conditions – hepatitis is one of them, held annually on 28th July. The other three are TB, malaria, and AIDS.

This illustrates the level to which it is of global concern – 500 million people worldwide are infected with hepatitis B or C (or both).[1] The viruses affect the liver – ‘hepar’ means liver in Ancient Greek. Both can be fatal if left untreated, leading to liver cancer and cirrhosis. 57% of liver cirrhosis worldwide and 78% of primary liver cancer is caused by hepatitis B or C.[2]

It is known as the ‘silent epidemic’, as both viruses can be asymptomatic for decades, and only present when it can be too late for treatment. Globally, 1.5 million people die annually from hepatitis B or C;[3] this is more than twice the annual death rate from malaria.[4]

It is estimated that 1 in 3 people have been exposed to either or both viruses at some point in their lives.[5] Not all people who have been exposed to the virus will contract it; some people will contract and develop an acute infection, which usually lasts a few months, and can be cleared by the body’s immune system or through treatment. Rates differ for hepatitis B and C - about 20% of hepatitis C infections will clear naturally,[6] while for hepatitis B it depends much more on age. Only 5% of children who contract the infection clear naturally, whereas about 95% of adults who contract the infection clear it as the immune system is much more developed.[7] Some people go on to develop chronic infection of hepatitis B or C, where the virus lives in the body and causes damage over a number of years. This can then lead to other life-threatening diseases such as liver cancer and cirrhosis.

In Europe, hepatitis B or C affects 1 in 50 people.[8] Low levels of awareness and education are hindering testing and treatment for both viruses, which can be preventable and treatable. This is contributing to a vast global disease burden of hepatitis-associated diseases, which are usually end-stage and chronic, where drain on resources is very high and quality of life for patients is very low. Early diagnosis can combat this.

UK context

215,000 people in the UK are thought to be infected with chronic hepatitis C,[9] and 180,000 with chronic hepatitis B.[10] Every pregnant woman in the UK is now screened for hepatitis B.

Department of Health and NHS campaigns regarding both hepatitis B and C have focused on the White British population, and the common ways the viruses are contracted within this group – primarily, intravenous drug users, and men who have sex with men. The association with drugs, sex and alcohol means that the illnesses are stigmatised and very rarely talked about in other communities.

However, there is variation in common ways to contract the viruses across different groups of people. As both viruses are transmitted through blood-to-blood contact or through bodily fluids, there are various ways they can be contracted.

Current resources, government campaigns and levels of practitioner knowledge do not reflect this variation, and therefore alienate and do not necessarily support other groups or communities.

Minority communities

Surprisingly for the severity and extent of the viruses, very little peer-reviewed research has been conducted on rates of hepatitis B and C amongst specific populations in the UK and worldwide; however, several studies[11] show that in East London, 5% of Pakistan-born people are infected; almost 4% of Somalia-born people are infected, and 2% of people born in Bangladesh are infected.

“These data [testing 4998 people of South Asian origin] indicate that nearly one in twenty people born in Pakistan and living in England has chronic viral hepatitis.”[12]

There is particular concern for the prevalence of infection amongst minority communities, as rates of testing are quite low, which suggests many are living with infection and are undiagnosed. This then could lead to unintentional transmissions to others, particularly as knowledge levels are so low regarding this, as well as prevention and better management.

Common methods of transmission

The most common way to contract hepatitis B amongst the Pakistani community in the UK is through mother to child transmission (MTCT), where the mother already has hepatitis B and passes it to her child while giving birth. For hepatitis C it is through poor medical practices, most often back in the home country, and includes re-use of needles for injections, vaccinations and other blood-related medical procedures such as transfusions. Re-using razors for shving and haircutting is also a risk factor for transmitting hepatitis C. For the Muslim community, particular care must be taken around the head-shaving ceremony for babies (traditionally undertaken seven days after birth), circumcision, and preparation for Hajj and Umrah in terms of removal of body hair.

Specific issues relevant to the UK Pakistani population

Asymptomatic – Some people do experience symptoms of hepatitis B or C, which are similar for both viruses and include a general feeling of being rundown (easily mistaken by GPs), feeling depressed, a yellowing to the skin which indicates jaundice, fatigue, nausea, possibly poor concentration and aches and pains. Many people report a sense of feeling ‘not right’ without being able to pinpoint anything in particular. However, hepatitis B or C are often not accompanied by symptoms of illness. People may have been infected with the virus many years earlier, while receiving medical treatment or a haricut as a child in Pakistan.

Language – The Pakistani community refer to hepatitis B as jirkaan (yellow = jaundice) and hepatitis C as kalajirkaan (black jaundice). Jaundice however is a separate illness and can indeed be developed by those who have hepatitis B or C (though not all patients who have jaundice have hepatitis B or C).

Lack of GP knowledge with regards to hepatitis B and C transmission, and who is at risk – There remains a need to increase GP knowledge with regard to the increased risk of hepatitis B and C amongst different groups, and the differences - context - for this. This lack of knowledge is contributing to low levels of testing. From research focus groups and key informant interviews conducted as part of this project, it is clear that patients are being told on a regular basis that they are not at risk of hepatitis B or C, and being refused tests. Years of campaigns focused on intravenous drug has contributed to a narrowing of knowledge with regard to who else may be at risk, and why.

Association with drugs, sex and alcohol creates stigma – The national campaigns that focus on drugs and unprotected sex have also unwittingly created stigma around both hepatitis B and C, despite the other ways in which it can be transferred. Amongst Muslim communities, the knowledge that does exist links both to extramarital sex, HIV/STIs, injecting drugs, and also drinking alcohol (generally people link liver to alcohol). All are associated with 'bad behaviour' and/or mistakes, meaning the illnesses can be hushed up and not talked about. This contributes to a lack of support for those who have the illness, and massive stigma towards them as people fear catching it.

Low knowledge around transmission methods - The research groups showed that many people were unsure about how hepatitis B and C are passed on, with some thinking that the viruses could be passed on casually, that is, through e.g. touching, toilet seats, bad polluted air, contaminated food. This is not the case – both hepatitis B and C are transmitted through blood-to-blood contact, and hepatitis B can also be sexually transmitted.

‘Hep C is more serious than hep B’ - Hepatitis C is seen as more severe than hepatitis B, or as a more severe form of hepatitis B. They are in fact different illnesses; one is not a more severe form of the other. They both affect the liver and have similar symptoms, but causes and methods of transmission. Another misperception is that hepatitis A can develop into hepatitis B, and this can then develop into hepatitis C.

Barriers to testing – The research groups showed that people often took years to go and be tested, for many reasons – fearing not being able to look after family if they have the illness, not being able to find the time to be tested, too many hoops to jump through, poor communication with doctors or doctors being seen as being dismissive, treatment will make things worse, not wanting to be a social outcast, not wanting to be associated with the illness (occasionally it was seen as potentially damaging to marriage prospects), etc.

Urban/rural – Main populations at risk tend to be from urban areas, where there are more opportunities for transmission. This in part explains the lower rates of hepatitis B and C amongst the UK Bangladeshi population, as the vast majority originate in the rural region of Sylhet. The Pakistani population on the other hand originate from a broader range of urban areas.

Age – First generation immigrants, who spent their childhood and early life in their home country before travelling to Britain, may well have at some point been exposed to the virus. British Pakistanis, Somalis and Bangladeshis, if they regularly travel back to their home country or even a one-off trip, could also potentially be at risk. As Census data show that up to 80% of the immigrant population in East London are under the age of 50, and that liver cirrhosis and cancer rarely present in people under 50, it is likely that the next few years will see a dramatic increase in the proportion of people presenting with end-stage liver disease due to chronic viral hepatitis.

Action: for patients

Testing for hepatitis B or C is very simple – this is usually done by:

Blood test. This requires a small amount of blood being taken, either through a finger-prick test or more usually an injection in the arm, which is sent away for analysis. GPs and practice nurses can perform this test.

Saliva swab, for hepatitis C only. The infection itself is NOT present in saliva, but can indicate if the virus has ever been present in the body. A blood test will confirm this.

“Think about your visits home – if you ever visited the barber, or if you had to seek medical treatment and had to have an injection for anything. This might be a long time ago – 5 years, 10 years, 20 years, 30 years. If any of these things happened, get tested. If someone close to you or in your family has ever had hep B or C, get tested.”

Prevention

For hepatitis B, there is a vaccine which is approved by the WHO. Regular screenings for hepatitis B in the UK take place during antenatal checks, and babies who are at risk receive the vaccine within 24 hours after birth. People can receive the vaccination at any age.

As hepatitis B can also be transmitted during sex, using barrier methods of contraception such as condoms should prevent this (particularly if you don’t know if the other person has the virus or not. The only way to know is a test. See Action for patients, above).

Although there is no vaccine for hepatitis C, there are many ways in which transmission can be reduced or stopped.

Improved medical practices – using sterile and/or new equipment, including razors for shaving, haircutting; needles for injections and other blood-related medical procedures such as transfusions; body piercing equipment such as ear or nose piercing etc. Making sure that equipment is completely sterile and not been re-used is also important for circumcision and shaving babies’ heads in Muslim communities

Other preventative measures for both hepatitis B and C include:

Not sharing toothbrushes (in case of blood to blood transfer)

Never sharing needles or any equipment for injections (this includes anything medical, for tattoos or piercings, or drugs)

Treatment

For hepatitis B, less severe cases usually clear the body within a few months, but this depends on the age of the person when the infection was contracted. Infection as a child is more serious than infection as an adult. More severe and chronic cases may involve antiviral medication and other things such as maintaining a good nutritional balance, but there is no specific treatment - it depends on the context of the individual.

For hepatitis C, there are a variety of treatments but currently the most common is antiviral medication. Courses of treatment vary depending on the genotype of the virus, severity of the virus (what stage it’s at), the individual, and what their priorities are in terms of dealing with the illness. It is possible to clear hepatitis C for good - be cured of it.

Please note: all content on this page focuses on primarily the UK Pakistani community and is based on current available information. Methods of transmission and advice may vary for other groups.

G Uddin et al (2009) ‘Prevalence of chronic viral hepatitis in people of south Asian ethnicity living in England: the prevalence cannot necessarily be predicted from the prevalence in the country of origin’ Journal of Viral Hepatitis, doi:10.1111/j.1365-2893.2009.01240.x

The project is also supported by:

Based in London, the Trust was established in 1999 as a national charity dedicated to hepatitis C. They provide a wealth of excellent information on all aspects of hepatitis C, including the production of research and reports on a regular basis. They also have a confidential helpline and provide support to people with hepatitis C and their families.